A Piece Of Me

We Teach Children To Ask Before They Take. Shouldn’t We Insist That Our Doctors Do The Same?

For nearly two hours I sat in the packed waiting room, worrying about being put under and cut open. I was then told that the staff was backed up, and I had a choice: wait five more hours or move from the outpatient area to the main hospital and have my gallbladder removed in 45 minutes.

I opted for quickness, and within 20 minutes, I lay on a gurney wearing a hospital gown and an IV. Happy medicine pumped in to relax me, and a nurse handed me three consent forms. A little anxious myself and more and more sleepy, I signed the forms without reading them, but, because I had recently read The Immortal Life of Henrietta Lacks by Rebecca Skloot, I wondered what they said—or didn’t say.

New York Times bestselling author Skloot started work on the book 21 years ago. Her biology professor talked about “HeLa” cells and their contributions to medicine. The cells are unique because they stayed alive and divided—still doing so today—and scientists continue to buy and study them. The professor said they were taken from a woman named Henrietta Lacks and that she was black.

A curious Skloot, just 16 at the time, couldn’t get more information from her teacher and couldn’t find details readily available. She would later be the one to dig up the whole story about the Virginia woman whose cells were key in creating polio and infertility treatments; understanding cancer, viruses and the atom bomb; and developing cloning and gene mapping.

Some sources, including Dr. Howard Jones from Eastern Virginia Medical School’s Jones Institute, were helpful during Skloot’s research. Jones treated Lacks for cervical cancer at Johns Hopkins Hospital in 1951, and he explained the medical culture that led to Lacks’ cells being taken (by George Guy, head of tissue culture research at Hopkins) without her consent—and without monetary incentive. If you don’t consider personal courtesy, the scientists and doctors weren’t doing anything wrong. “They weren’t breaking any laws,” said Skloot in a phone interview. Sixty years later, that’s still true. Medical guidelines recommend that doctors tell patients if they are retaining cells during a procedure, but no law states that they must—or that they’re required to share any financial gains that later come from research. The federal government seems to have abandoned efforts started in 1999 to possibly introduce a law requiring patient consent for cell research.

Henrietta Lacks never knew her cells had been “donated” nor was she ever offered the chance to know—and most likely, the same is true of you.

Not many people have questioned what happens to their cells, tissues or organs after being treated by a doctor, but a few have. John Moore did so after having bone marrow, blood and semen samples taken for seven years by Dr. David Golde, a cancer researcher who had removed his spleen to help cure his hairy-cell leukemia. Moore had moved from Los Angeles, where the doctor was located, to Seattle and flew in every few months for years to have samples taken. It was all part of his follow-up care, he believed. When he asked if he could just have a local Seattle doctor collect the samples, Golde offered to pay for his travel expenses and cover the cost of a fancy hotel.

During one visit, Moore was asked to sign a form that would grant the University of California (where Golde worked) all rights to “any cell lines or any other potential product which might be developed from the blood and/or bone marrow obtained from [him].” The first time he received the form, Moore circled “I do,” later saying that he didn’t want to rock the boat. At his next visit, he received the same form and grew more suspicious. He asked Dr. Golde if the follow-up work had any commercial value. He says the doctor told him “no,” but he decided to circle “I do not” on the new consent form just in case.

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